A Lil' Boy's Journey to Live….

Riley’s appointment with lung transplant .. Dr Goldfarb went well. Even though he has a little cough his lungs sound ok. Labs all seem to be in Riley’s range.

The only hiccup was that Riley has lost about 8 lbs over the last 6 months or so. May not seem like much but when you were only 65 lbs to begin with its a pretty big drop. We know why. Riley has been trying to transition to oral feeding versus g tube feeds. He was down to only 2 night feeds a week running at half strength. Hope being after this appt he could have cut back more. Unfortunately that will not be the case. Riley will continue with 2 feeds a week with a higher strength. Needless to say Riley is not happy but understands why. We did speak to nutrition and she gave us a bunch of samples for Riley to try that are high calorie drinks. Hopes being that if he can find one he likes he could possible drink his extra calories versus having them go through the feeding tube. He is excited to try but is a very picky eater and drinker. Fingers crossed he finds one he likes!